To blame or not to blame... that is the question...

Having emailed PALs (the Patient Advisory Liaison team) at the hospital about my pregnancy and what happened to Isla, I received a reply from the head of midwifery. 

I met with her the very next day (last Tuesday) and went fully loaded with research documents, medical journals, graphs and statistics, as well as my own record of notes and phone calls made, with dates etc... 

She started the meeting by stating her condolences which I gratefully received. She explained that she has already been looking into our case, as they do with all stillbirths, by looking at my (very lengthy!) notes. She had concerns that she'd already broached with the relevant midwives with regards to what she had read in my notes, but she was greatly concerned by what I emailed about with regards to being told 'No' for the parvovirus immunity test.  

And then came an immediate shocker - she was appalled to read that I was told 'no', as it is the practice of midwives and GPs in the Trust to give all women in high-risk positions the immunity test. She said that she has looked into what technically constitutes a 'high-risk' person but agreed that a primary school teacher was certainly that. I explained that I had told my midwife my job and explained how worried I was about it, knowing someone who had lost their baby to it. I told her that midwives in some parts of the city were indeed giving the tests to teachers, but that my concerns had been poo-pooed over the phone. I showed her the evidence that showed that 2012 was an epidemic year and that the South West was having its worst epidemic ever. And I showed her the RCOG Alert that was sent to all trusts warning them about the parvovirus epidemic, which she agreed had been seen by staff. She said there is a professional expectation that the staff will keep abreast of such things also, but that they were in fact told to give the tests to those at risk. No questions asked! She said she'll speak to the midwife about this specifically. She was also hugely concerned about the second midwife who commented that she'd not really heard of it before and would need to go back and look it up. She will also be speaking to her about that as that is a problem too. 

She said she'd already spoken to my midwife about the events of the day before we lost Isla, when I went to her about my feet and lack of urination. In my notes there is very brief detail. She was shocked (again) to hear that I had specifically mentioned the rapid weight gain, lack of urination and severe bloating at both my 24 week appointment with midwife number 2 as well as the drop-in appointment the day before we lost Isla. She said  it should have rung alarm bells on both occasions, certainly about the weight gain and even more seriously about the lack of urination - even a urine infection can be dangerous for a baby. Although she did say that, having sat down with my midwife to go through the events of that appointment, she hadn't mentioned the lack of urination or weight gain (it wasn't written in my brief notes), and they had come to the conclusion that not admitting me was fine. Had she considered the weight gain and lack of urination better and admitted me, who knows. I explained that it seems reassuring at the time to have your worries allayed but in reality, it was dangerously dismissive and had they not been so, they could possibly have saved Isla her life and me the pre-eclampsia.

I am adamant that I don't want other women to be dismissed so easily, certainly over the phone. Midwives need to know more about parvovirus and they should be testing women as standard or at least those in high-risk positions or those that ask for the test. I am sure that had they taken me more seriously, that Isla would still be here and that breaks my heart, it really does. If they'd scanned me when I was in hospital with a bleed at 22 weeks, they may have caught the hydrops, or certainly at 24 weeks they would have. If they'd sent me in for monitoring on the Tuesday, would it have been too late?

She asked if we want to formally complain. I said that 7 weeks ago I'd have been lawyered up and on to the press, but I need to move forward with my life. But then, when I told Dan about the meeting - he has been very non-blaming since the start - he got really angry and thinks someone should pay. She said she'll write everything down in a letter for us when she's talked to the midwives again, and then we can decide whether we want to make a formal complaint or not. She seemed to be ready for me to complain and seemed also to understand why I would want to. 

I just need to know it won't happen again and that the midwives won't be so dismissive of concerns or the signs and symptoms of such dangerous things - YES, PRE-ECLAMPSIA CAN HAPPEN THIS EARLY ON! I was showing signs at 24 weeks, possibly a mirror-syndrome of Isla's illness, yet no one took me seriously enough. I need them to have learned a lesson, because I've certainly learned a good few million - never take the reassurances of others, even medical professionals, over your gut instinct. That has cost me my baby girl and the sadness of that will ache in my soul forever and ever. 

Isla McKillop - Born Still but Still Born

So our baby girl was born forever sleeping on Friday 13th July at 23.52, weighing 2lb 1oz. She was so beautiful and we named her Isla, as we always were going to. 

She touched our lives so deeply and both myself and my husband realised the true extent of parental love. We found peace in Isla and felt unbounded pride and love when we looked at her and held her close. 

We are burying her in a woodland ground on Monday 30th July. We have chosen a crab apple tree to mark her grave and will plant wild flowers throughout the year. As Isla didn't get to grow up herself, we are placing her somewhere she can be part of life, growth and beauty. 

They say there is a reason,

They say that time will heal,

But neither time nor reason,

Will change the way I feel,

For no-one knows the heartache,

That lies behind our smiles,

No-one knows how many times,

We have broken down and cried,

We want to tell you something,

So there won't be any doubt,

You're so wonderful to think of,

But so hard to be without.

2 little hands – that will never grip
 2 little legs that no longer kick
A delicate face that will never cry
And tiny hands that can’t wave goodbye
2 precious feet that will never walk
Soft, blue lips that will never talk
But a beautiful soul that has gone up above
And left me with feelings and memories of love

An Angel Never Dies

Don’t let them say I wasn’t born,

That something stopped my heart

I felt each tender squeeze you gave,

I’ve loved you from the start.

Although my body you can’t hold

It doesn't mean I’m gone

This world was worthy, not of me

God chose that I move on.

I know the pain that drowns your soul,

What you are forced to face

You have my word, I’ll fill your arms,

Someday we will embrace.

You’ll hear that it was meant to be,

God doesn’t make mistakes

But that won't soften your worst blow,

Or make your heart not ache.

I’m watching over all you do,

Another child you’ll bear

Believe me when I say to you,

That I am always there.

There will come a time, I promise you,

When you will hold my hand,

Stroke my face and kiss my lips

And then you’ll understand.

Although I’ve never breathed your air,

Or gazed into your eyes

That doesn’t mean I never was,

An Angel never dies.